1

Chapter 1

INTRODUCTION AND IT’S BACKGROUD

1.1. Introduction

The child with a down syndrome is considered a blessing and is

said to have a unique way in bridging the family members together instead

of creating a gap between them. Parents who have trisomy 21 children

face different challenges and it leads to changes in the lifestyle of the

whole family. Down syndrome (DS) is the most frequent genetic cause of

mental retardation associated with a number of medical problems that

may impair their life expectancy. (Rogers & Coleman, 1992). DS is a

common chromosomal abnormality, usually due to an extra copy of the

chromosome 21. This explains the alternative name for DS, ‘Trisomy 21’,

from the Greek words ‘tri’ and ‘soma’ meaning ‘three’ and ‘body’ (Imrie,

2003). It is a chromosomal accident, not caused by anything the parents

have done before or during the pregnancy and is only very rarely inherited

(Wishart, 2001). Children with mental handicaps, including Down

syndrome, spend more time at home, and parents must shoulder more

caregiving responsibilities than previously. These trisomy 21 children were

often described as friendly, yet their attention difficulties, stubbornness,

and noncompliance problems were noted.

 Having a child with Down Syndrome is an unexpected and stressful

experience for most parents but they are the ones who have a key role to

play in determining the extent of their child’s handicap (Seligman, 1999).

Identification and acceptance of learning disabilities are difficult processes

and promoting the child's optimal development require adaptation by all

family members. When parents are asked about their experiences of

parenthood in relation to a child with DS descriptions tend to vary,

containing a wide spectrum of emotions that may change with time.

Parents’ initial reactions to the child’s diagnosis have been described as a

crisis often characterized by shock, denial or disbelief (Blacher, 1984).

However, many parents express a wide range of emotions (Larson, 1998).

Feelings of love and affection towards the child, just the way she or he is,

coexist with wishes for a miraculous cure of the disability.

In the Philippines, 1 in 800 babies born has Down syndrome or 1,875

cases a year out of 1.5-million live births (The Manila Times, 2014). These

children comprise a very small percentage in the population, it is easy for

them to be ignored. Despite the small space they occupy in the

population, they are still need to be treated justly and they deserve fair

attention from their families.

This research wants to study about the experiences of Filipino parents in

taking care of children with Down syndrome. "He's chromosomally

enhanced, and he enhances my life” (Sullivan, 2014). It was quoted from a

mother of a child with Down syndrome, it sounded peaceful and calm. But

there is beyond a mother’s view, a view wider through a familial

perspective. Some parents will accept the impairment more easily than

others and will carry out the task of caring for the child more cheerfully

with greater devotion. However, others feel isolated and distressed and

may experience chronic sorrowfulness (Gallagher, 2013). A life having a

child with down syndrome gives parents unique experiences, with unique

joys and difficulties.

 Having a child with Down syndrome is an unexpected and stressful

experience for most parents but they are the ones who have a key role to

play in determining the extent of their child’s handicap (Seligman, 1999).

Identification and acceptance of learning disabilities are difficult processes

and promoting the child's optimal development require adaptation by all

family members. When parents are asked about their experiences of

parenthood in relation to a child with DS descriptions tend to vary,

containing a wide spectrum of emotions that may change with time.

Parents’ initial reactions to the child’s diagnosis have been described as a

crisis often characterized by shock, denial or disbelief (Blacher, 1984).

However, many parents express a wide range of emotions (Larson, 1998).

Feelings of love and affection towards the child, just the way she or he is,

coexist with wishes for a miraculous cure of the disability.

In the Philippines, 1 in 800 babies born has Down syndrome or

1,875 cases a year out of 1.5-million live births (The Manila Times, 2014).

These children comprise a very small percentage in the population; it is

easy for them to be ignored. Despite the small space they occupy in the

population, they are still need to be treated justly and they deserve fair

attention from their families.

 This research wants to study about the experiences of Filipino parents in

taking care of children with Down syndrome. "He's chromosomally enhanced,

and he enhances my life” (Sullivan, 2014). It was quoted from a mother of a child

with Down syndrome, it sounded peaceful and calm. But there is beyond a

mother’s view, a view wider through a familial perspective. Some parents will

accept the impairment more easily than others and will carry out the task of

caring for the child more cheerfully with greater devotion. However, others feel

isolated and distressed and may experience chronic sorrowfulness (Gallagher,

2013). A life having a child with down syndrome gives parents unique

experiences, with unique joys and difficulties.

1.2. Background of the Study
1.3. Statement of the Problem

This research aims to give enlightenment on the experiences of parents;

specifically the researches would like to address the following questions:

1. How does a Filipino parent understand DS?

2. What are the reactions of the parents when they found out that their

child is diagnosed with DS?

3. How does a Filipino parent take care of a child with DS?

4. What are the challenges of having a child with DS?

5. What are the positive experiences from having a child with DS?

6. What are the coping strategies a Filipino parent has, from having a

child with DS?

1.4. Hypothesis
3